It has been confirmed by the news media that The LeRoy Twelve are going to be evaluated and treated by Dr. Rosario Trifiletti, a pediatric neurologist and specialist in the diagnosis and treatment of PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
This is EXCELLENT news. I applaud the parents’ decision to fire Dr. Mechtler and his crew. I have complete confidence that Dr. Triffiletti will be able to tell the parents of The LeRoy Twelve exactly which infectious bacteria has invaded their children’s brains. I also have no doubt that Dr. Triffiletti’s treament with antibiotics will have a significant positive effect. There may well be a “miraculous” cessation of symptoms and return to previous level of functioning for many or even all of the students who have been so ill these last many months.
In my opinion, there is a very positive side of this whole episode. Not to make light at all of the obvious pain and suffering the girls and their families are going through. They are NOT faking. This is NOT Conversion Disorder or “Mass Hysteria.” And… it is NOT hopeless. These beautiful young women have been struck down as if by lightening, in what should be the happiest time of their lives. Instead of enjoying their final year or years of high school they are homebound, in pain, and even harrassed and ridiculed by people who apparently have nothing going on in their own lives and who feel it is their right to revictimize those who are already suffering.
What could I possibly mean when I say there is a positive side of all this?
Before answering that question, we have to discuss what’s happening in the online forums. As I have stated before, PANDAS is not as rare as some doctors would have you believe. It is also increasing in incidence and the onset of clinical symptoms is becoming more common in older adolscents. This part of PANDAS is relatively new, and I fully believe it is because of the rapidly increasing number of vaccines that are now being given – and “mandated” for high school students attending public schools. I have made my thoughts on this very public and have cautioned repeatedly that if The LeRoy Twelve are diagnosed and treated for PANDAS, this DOES NOT mean what has happened is not the result of vaccine-injury. In fact, if they ARE diagnosed with PANDAS, it points directly to vaccine-injury as a causal event.
I have known about PANDAS since 2001-2002. I have been treating my daughter’s PANDAS for the last several years, using supplements and diet to rebalance her immune system and increase her resistance to infection. We have had great success with this method, as have many of the patients I worked with between 2003-2010 when I was in private practice. I have used (with my daughter) and have recommended antibiotic treatment (for other children) for the acute bacterial infections. I have worked with physicians, helping to educate them about PANDAS and making recommendations for treatment, especially with IM bicillin. IM bicillin is an injected form of antibiotic that treats strep and works very well for a significant number of children. Part of the reason IM bicillin is preferable (in my opinion and experience) is because it is not as likely to damage the balance of bacteria in the gastrointestinal tract, where the good bacteria is essential in keeping pathogenic yeast overgrowth from taking over. In the children I have seen, many of whom have not only PANDAS, but who have also been diagnosed with Autism, the overgrowth of yeast in the GI tract is very near 100%. With the patients I have been priveleged to work with, we have tried to avoid the use of oral antibiotics whenever possible because once yeast takes hold it is much more difficult to get rid of than the bacterial infections that cause PANDAS symptoms. In addition to IM bicillin there are also many natural agents that can be used to strengthen the body’s resistance to bacterial infections. Among these, Olive Leaf Extract, Grapefruit Seed Extract, Cranberry Extract, High Potency Proteolytic Enzymes and Soveriegn Silver are some of the most effective. Additional prescription medications that have shown promise with PANDAS include oral or IM baygam, Low-Dose Naltrexone, and IVIG (Intravenous Immuno Globulin). IVIG has been highly effective at treating PANDAS, with one study showing complete cessation of symptoms in 86% of patients. However, IVIG is also very expensive and it is frequently not covered by insurance. The reason IVIG and bagam are effective is not because they treat strep (or other bacterial infections), it’s because they repair the damaged immune system that sets kids up for the infections in the first place. There are natural ways to balance the immune system and these can be used without having to have a prescription. This is what I have done with my daughter and with other kids with whom I have worked. Thing that work very well include Transfer Factor, colostrum, and glycoproteins including beta glucans and arabinogalactin. Vitamin D3 also works wonders to balance the immune system and it costs about $10 a bottle. The most important thing about these options (IMO) is that unlike long-term antibiotic use (which my daughter and many of the other kids I’ve seen) have had as young children, the things I have discussed and believe are certainly viable alternatives, do not lead to the depletion of vital enzymes and bacteria in the gut.
An important component of treating strep (and other bacterial and viral infections) naturally involves changing the diet. Food is a wonderful healer – if it is real food. In particular, anti-inflammatory foods and foods with high anti-oxidants are key in helping to combat chronic bacterial (or viral) infections. I absolutely agree with the use of antibiotics for the acute infection. In children who need to have longer-term administration of antibiotics, it just makes sense to me to do it in a way that does not cause even more problems down the road. This stance has made me unpopular in the last few days, especially with many of the parents of children who have been treated by Dr. Trifletti. I think this is very unfortunate. This is not about being right. It’s about ensuring that parents do not have a false sense of security, especially with regard to the issue of the risk of severe reactions from vaccines.
The other issue that is causing division between myself and many parents of children diagnosed and treated for PANDAS is the question, “Is PANDAS really vaccine-injury?” I say YES. Many PANDAS parents say NO. Here is a comment I received last night from one PANDAS parent who disagrees with me on the vaccine-injury component of this:
Marcella – I agree with you, there is a relationship between increased vaccinations and neurological disorders but the missing piece is the bacteria that causes PANDAS – specifically strep. Mycoplasma or Lyme act similarly too. Our teenage daughter received a vaccine when she had a strep infection but we were unaware since she had no symptoms of strep. Immediately she developed severe neurological disorders and we concluded it was a reaction to the vaccine. We were wrong. The vaccine opened her blood brain barrier and allowed the strep that was waiting to come in and attack her brain. Dr. Trifiletti has been on the forefront of defining PANDAS for 10 years – he diagnosed our daughter and gave us direction. He targeted and treated her strep and her neurological symptoms gradually disappeared – it’s a very long process but it’is all evident in her blood work. Thank God Dr. Trifiletti will be treating these girls – he will give them their lives back.
In my response to the mother who left the previous comment, I assured her that I don’t think we really disagree on anything. As she states, the vaccines caused the increased permeability of the Blood Brain Barrier (BBB). The strep infection just took advantage of the situation that was created by the vaccine. Therefore, she was not “wrong” when she thought her daughter’s illness was the result of vaccines. She was correct. Here is a part of my response to her:
The scenario you describe with increased permeability of the BBB is exactly what happens with many children who regress after vaccines and are diagnosed with autism. In many of their cases it’s the measles virus that enters the CNS through a BBB that is no longer working properly because of vaccine damage. There is a lot of research, much of it performed by Dr. Vijendra Singh, that shows an autommune attack on Neuron-Axon Filament Protein (NAFP) and Myelin-Basic Protein (MBP) in children who have measles (vaccine-strain) in CFS (Central Spinal Fluid). Just as with PANDAS, children with autism frequently respond to medications that address their high measles viral load. BTW – a very high percentage of children diagnosed with “autism” also have PANDAS. Ultimately the question that has to be asked is, what caused the increased permeability that allows these infectious agents to enter the central nervous system. Strep or measles didn’t CAUSE the damage to the BBB… they are just opportunistic infections hanging around waiting for the door to open. The vaccines are what opens the door.
Now…. Here is where we get to the positive part of this whole thing. I will put this in bullet form so hopefully it will be easier to follow.
- Parents of children who regressed into autism following vaccination, particularly vaccination with the MMR vaccine, have maintained for nearly two decades that their children are vaccine-injured.
- Officials who support and promote vaccines have staunchly denied that MMR could have anything to do with autism.
- Dr. Andrew Wakefield has been crucified for even suggesting that the MMR vaccine might be associated with the gastrointestinal damage he saw in several of his young patients who had sudden onset GI disease and who were also subsequently diagnosed with autism. Note: These children have come to be known as “The Lancet Twelve.”
- Researchers investigating the autoimmune component of autism have found that measles virus (from the vaccine), but not mumps or rubella, in combination with other viruses (especially HHV-6) causes an autoimmune attack on specific brain proteins. Autoimune Autism is thought to represent a significant subsection of children diagnosed with autism.
- PANDAS has been identified as the result of an autoimmune attack on particular brain structures as a result of bacteria that crosses the BBB.
- Bacteria are larger than viruses. If bacteria can get through the holes created in the BBB by the toxins (mercury, aluminum, formaldehyde and polysorbate 80) contained in vaccines, so can viruses, and they can do it with greater ease because they are smaller.
- Vaccines damage the BBB because the toxic additives they contain are free radicals. Free radicals cause oxidative stress, which depletes essential minerals, especially magnesium and zinc.
- Zinc is essential in maintaining the integrity of BOTH the BBB and the lining of the gastrointestinal tract. Vaccines damage both, which allows BOTH bacteria AND viruses to enter into places where they are not supposed to be.
- In the brain, the result is sudden onset of neurological symptoms, including seizures, aphasia, motor control problems, and autism.
- In the gut, the result is often sudden onset diarrhea and/or constipation.
Some children exhibit symptoms of brain damage after vaccines and some exhibit symptoms of gastrointestinal damage. Some, like the child pictured below, exhibit both.
There is no doubt where this child’s autism and gastrointestinal damage came from. If bacteria can enter through holes in the BBB, so can viruses. And they do. When it happens following administration of vaccines, there can be no doubt that the symptoms that follow are due to vaccine-injury.
This child eventually got over his first bout with measles, but the gastrointestinal damage continued. By the time I saw him, two years after his initial vaccine-injury, he was still having watery diarrhea up to ten times a day and had not had a singled formed stool since the MMR. He had been diagnosed with autism and was non-verbal.
One of the hotly contentious issues that has been debated since Dr. Wakefield’s work regarding The Lancet Twelve was published has been that of persistent measles virus (vaccine strain) as a possible causal factor in autism. The “official” decision on this is that it does not happen and Dr. Wakefield was “fear-mongering.” It does happen. If it happens in small-town Southwestern Indiana, it happens other places, too.
The positive side of what is going on in LeRoy, New York is that because the parents of The LeRoy Twelve refused to accept the diagnosis of Conversion Disorder, and because they are seeking appropriate diagnosis and treatment for PANDAS, the entire world is watching and becoming more educated about some still believe is a “rare” disorder. Many people who would never take the time to question if there is a link between autism and vaccines ARE questioning what’s going on with The LeRoy Twelve. As a result of the questions raised in New York, we are now able to really look at the statements by the government and by the vaccine manufacturers, who collectively tell us that measles from the MMR cannot enter the brain because it can’t cross the blood brain barrier. Given that bacteria (which are larger than viruses) can enter the brain, does it make sense that viruses could not?
What is the common factor between The LeRoy Twelve and The Lancet Twelve?
ANSWER: Vaccine-injury to the Blood Brain Barrier, which caused increased permeability and allowed infections agents (bacteria and viruses) to enter the central nervous system. I do not know if The LeRoy Twelve are also experiencing gastrointestinal problems, but my best hypothesis is they probably are, since the same factors are involved in gastrointestinal damage from vaccines.